A Sydney family has raised more than $10,000 for a team of researchers at the Harry Perkins Institute of Medical Research who are investigating a genetic disease that affects their son, George.
Doctors believe that George has a rare genetic disease called nemaline myopathy which primarily affects skeletal muscles, causing them to weaken. The disease varies in severity and can sometimes worsen with time, impacting a person’s ability to move, walk, swallow and even breathe.
Nathan and Nadia Teong were inspired to raise funds that would help George, and other children that are affected by nemaline myopathy, by supporting the Neurogenetic Diseases Laboratory at the Perkins.
“The research being conducted into nemaline myopathy is very promising, and we hope that in George's lifetime, there may be more that can be offered than just breathing, feeding and mobility aids,” Nadia said.
So far more than eighty generous friends and family members have supported the fundraiser by making donations in lieu of gifts to celebrate Nathan’s 40th Birthday. The family initially hoped to raise $1,000 but the outpouring of generosity from their loved ones saw this increase to an incredible $10,000.
The funds raised by the family will support the work of the Neurogenetic Diseases Laboratory at the Perkins, led by Professor Nigel Laing AO. The team have been hunting human disease genes for nearly thirty years and have made many world-first discoveries, including the identification of numerous genes that cause nemaline myopathy.
“We want to thank everybody who has donated and especially Nathan who has been so generous by pledging his 40th birthday,” said Dr Gina Ravenscroft, a leader in the field of nemaline myopathy gene discovery who will directly benefit from the funds raised by the family.
She went on to add, “it is so inspiring because this family have read about our work and organised this amazing fundraiser on the other side of the country. The money they have raised will help us to help people across the world with this rare disease through further research into improved diagnosis, better therapies and treatments for children like George.”